Why you should care

In the 2005 novel Never Let Me Go, Ruth, Tommy and Kathy are watched closely by “guardians” at their boarding school, Hailsham, in the countryside of England. Hailsham is a decidedly … eerie place. Throughout the book, readers get a sense that the characters and the world they inhabit aren’t quite real. One day, a guardian reveals to the students that they’re clones, created for organ donations. After their donations, the children’s fate is sealed: They will die.

Genetic editing, the subject of Kazuo Ishiguro’s 2005 dystopian tale, has seized the imagination — and fear — of humans for decades. Why is the idea both captivating and terrifying? Perhaps because this science always seems like it’s on the brink of being possible, but slightly out of reach.

This week, it became a little more real as Chinese researcher He Jiankui claimed he used the gene-editing tool CRISPR to make the world’s first genetically edited babies. He says he altered the embryos of seven couples (the males had HIV) during in vitro fertilization (IVF). This led to one pregnancy and the birth of twin girls with pseudonyms Lulu and Nana.

Gene surgery is another IVF advancement and is only meant to help a small number of families.

He Jiankui

He wasn’t trying to cure an existing disease, but rather remove the pathway through which HIV enters by instructing CRISPR-Cas9 to disable a gene called CCR5. His goal? Babies with HIV resistance, a trait that fewer than 1 percent of people are estimated to have.

He, 34 and a father of two girls, studied at Stanford University and Rice University before returning to China, where he runs two genetics companies and a lab at Southern University of Science and Technology (SUSTech)in Shenzhen. His recent work broke from scientific protocol and ethical norms, both in method and delivery. The research wasn’t published in a peer-reviewed journal, so his claims that the editing was successful (and that no other genes were harmed) remain unverified. Unconventionally, he made the announcement at an international gene editing conference and in interviews with the Associated Press. Expanding on his motivations in a YouTube video, He spoke about discrimination that HIV-positive people still face in China and many developing countries. “Gene surgery is and should remain a technology for healing,” He says in the video, in English with lab equipment arrayed behind him. “I understand that my work will be controversial, but I believe families need this technology, and I’m willing to take the criticism for them.”

This move has triggered a flurry of backlash and concern in the scientific community. Using CRISPR to modify sperm, eggs or embryos is banned in the U.S. (besides in lab research), but it’s permitted in China. With this technology comes the risk of altering other genes that weren’t meant to be modified. When CRISPR is used to treat deadly diseases in adults, those changes are confined to the individual. But when it comes to embryos, those changes can be inherited by future generations. Even if the process goes smoothly, people with deficiencies in CCR5 are more susceptible to conditions like West Nile Virus and Japanese encephalitis. Some scientists also say He’s editing wasn’t complete. “Modifying human embryos at this stage in our understanding of biology is clearly unethical,” says Christopher Anderson, a bioengineering professor at UC Berkeley. “We do not yet understand the full biological consequences of these actions even in small animals.”

Critics such as Sandip Patel of the University of California at San Diego were legion on social media.

The mirror analogy here would be if you and I as physicians developed a cold fusion reactor in a country w/o brownouts without ever having done nuclear reactor design,flipped the switch w/o any safety inspection or even checking if it produced power,then posted vid on instagram

Meanwhile, Harvard University geneticist George Church called HIV “a major and growing public health threat,” telling the Associated Press of He’s gene editing: “I think this is justifiable.”

He took leave from teaching this year but is still on SUSTech’s faculty and runs a lab there. The university says it wasn’t aware of He’s research and is investigating him. He also only provided notice of this research in a Chinese registry of clinical trials in early November. What’s more, the team’s informed-consent document frames the work as an “AIDS vaccine development project” and uses technical language, raising the question of whether participants fully understood what they were consenting to.

Many fear that editing human embryos will create a slippery slope to eugenics. If society treats gene editing like vaccinations, then could all embryos be edited to prevent as many diseases as possible? Is susceptibility, in itself, a disease? And at what point does this logic stop? “It risks creating a new, genetically modified elite … who can’t get sick but passes it on to other people,” Eben Kirksey, an associate professor of anthropology at Deakin University, told The Guardian.

Still, there are substantial benefits to human health at stake. CRISPR could slow the aging process and help humans avoid conditions like obesity and Alzheimer’s disease. And while the concept of editing embryos is ruffling feathers right now, societal norms around fertility are always changing. IVF was considered controversial when it first emerged in 1978. The birth of the first “test tube baby,” Louise Joy Brown, attracted controversy, but an estimated 8 million babies have been born from IVF and other advanced fertility treatments since then. “Gene surgery is another IVF advancement and is only meant to help a small number of families,” He says in the video.

Most troubling to his many critics is how He breached globally accepted scientific safeguards. “I had hoped that the research community at large would adhere to the informal moratorium on embryo editing for purposes of reproduction and am deeply disappointed to see a scientist claiming to have forged ahead nonetheless,” Rachel Haurwitz, CEO of Caribou Biosciences said in a statement.

He shattered those norms in pursuit of what he sees as a righteous cause. Forty years from now, will he be seen as a pioneer or pariah?